Picturing Life Stories in a Biomedical Setting: A Phenomenological Analysis of Neonatal End-of-Life Photography

This dissertation explores End-of-Life (EOL) photography, a common practice in North American hospitals whereby nurses facilitate photography for families around the death of their newborn. It is based on a qualitative study involving semi-structured interviews with 10 parents bereaved by a neonatal death in the last five years, who all participated in EOL photography in the same Canadian neonatal intensive care unit (NICU). The focusing research question asked how parents experience this photography within the NICU setting and in their lives beyond the hospital. The study’s methodology combines the existential phenomenology of Maurice Merleau-Ponty and the critical theory of Michel Foucault to consider the intersections of lived experience, media technologies and the material structures of power/knowledge. The method is modeled on an interpretive phenomenological analysis approach involving an embodied hermeneutic and integrating photo elicitation, as the participants were invited to bring their EOL photographs to the interviews. The dissertation situates EOL photography within the contemporary NICU, revealing the practice as an experience of living relationships between nurses, parents and newborns in the biomedical setting. It considers how the move from film to digital photography developed the practice from “memento-making” to collaborative “story-telling.” New opportunities to construct the newborn’s life-story is shown to be integral to the parents’ knowing their newborn in life and healing from their death, yet opens complex questions around sharing this life-story within the families’ social sphere. The dissertation reflects on these experiences in the context of a broader sociocultural ambiguity around death-in-birth, connecting EOL photography with the politics of biomedical reproduction and end-of-life. The dissertation concludes by conceptualizing EOL photography as a practice of palliative space-time, which works towards presence, proximity, attention, and care into end-of-life in a biomedical setting.